Christmas in July

One year, long ago, Lou left his Christmas tree up until July. I am not sure if he did it because he was lazy, busy, or just wanted to. He is such a Christmas nut. That summer, his two nieces came to visit from wherever they were living at the time, maybe Tennesee? They were young, maybe 5 and 9, or younger? And their mommy, Lou's sister, was sick. I don't know if she was sick at the time, I think she probably was. This was all before I entered the picture ("BC", before Cathy). Anyway, as I understand it, when Uncle Lou picked his nieces up at the airport, he told them that Christmas is celebrated in July in Chicago. "Oh sure Uncle Lou", I can imagine them saying. And I can just see the twinkle in Lou's eyes. He loves to tease, too, so you just never know. But this wasn't a joke. He sure surprised them when they walked through his apartment door, and there was the tree, all lit up, with presents underneath! Can you imagine how fun that must have been, for ALL of them?? I think Lou said the girls slept under the tree that night. What a memory! Visiting Uncle Lou in his nifty downtown Chicago apartment, and celebrating Christmas in July. I love that story. It's vintage Lou. I made a big mistake tonight. I watched the movie The Family Stone. Damon told me it was sad. I should have listened to him. It takes place during the Christmas season. All about family. And yes, somebody dies. It made me ache. Maybe we should have Christmas in July this year....the last two Christmas' we've had have been sad for us. Just not the same. Christmas in July would probably be no different. I think it is going to be a long time before we have a happy Christmas again.

It's the Little Things

It's the little things along the way, the small, sometimes subtle (sometimes not), changes in the situation, that push us, kicking and screaming, into the next phase of this journey. I cling with all my might to hang on to whatever is the current "normal", only to find I must, at some point, release it, and move on to the new "normal". Soon, they all add up to an unrecognizeable life, but still, I cling. Take the hospital bed. It would have been so much easier to have had it sooner. Easier for us, taking care of Lou, and easier for Lou. But no, I waited until it was actually dangerous for Lou to be in our bed because he had tumbled out, before getting the hospital bed. I ignored the need until I couldn't any longer. And then, there it was. I pushed it right up next to our bed, raised it to the same level, put pillows over the small break between the two beds, and slept holding onto Lou as if it were one giant bed. It worked wonderfully for over a month. Not now. Now, we need the beds separated, so that we can get around the bed to take care of things during the night. I said "let's try to keep it the way it is for awhile more".... and we did, for two weeks. But last night, the beds were separated. The bars went up on the side closest to me. The space between the two is as narrow as it can be. But it's there. I can only put my hand through the bars and touch Lou's arm, and sometimes, hold his hand. It's not good enough. There are times he gets very anxious during his sleep. I need to be there. One more little thing, in a string of so many, that add up to this unrecognizeable life. And still, I cling.

"When The Going Gets Tough.....

The Tough Get Going". That was a mantra in my home when I was growing up. That, and "do your best, forget the rest". I can still hear my dear dad saying these simple words to me. It worked, I think. They are imprinted in my psyche. And I do try to follow them. It certainly isn't always easy. There have been so many times over these last 21 months when I did NOT want to be tough and get going. All I wanted to do was pull the covers over my head and stay put. Now is one of those times. The going is tough...and getting tougher. I never thought anything could be harder then some of the early days of this, the depression Lou experienced for months on end, the unending questions, the treatments, weekly blood tests, MRIs, all of that. I thought that was tough. This is tougher. This, doing "nothing", but "being" and trying to forge a life ,for all of us, feeble attempt that it is. It's getting harder for us to "transfer" Lou (that being the word for "move to another location" such as the family room). Soon, Lou's life will probably all take place in the bedroom. I'm dreading that day. "When the going gets tough..." I've been thinking about what has kept me going. Besides my love for Lou. And for my two sons. I think it is all of you. I know it is. As awful as this journey has been, I have been blessed to find friends along the way to keep me going. New friends and old friends. How lucky I am. There are so many good people in the world, I know that now. You have to be open to it. Not sure I was totally open to it before. I sure am now. There's Walla Walla Washington, for one thing. Thanks to my brain tumor buddy Michelle Meyer, I'm connected to Walla Walla and all the good people there. They're amazing. I'm going to visit WallaWalla someday. I have to. So many other brain tumor buddies I've met online, too many to mention here, Cheri, Claudia, Jim, Ted, Diane, Sandie, CB, Maryann, so many more, too many. They keep me going. And my girlfriends of course. And my family. And all of our helpers here...Doris, Raymond, Joyce, JoAnn, all such wonderful, caring people. "When the going gets tough...the tough get going", yes, ..but better with the help of family and friends. Thank you, all. I can only be tough knowing that you are all there with me.

Don't Sweat the Small Stuff....

And it's ALL small when compared to THIS. How many times have you heard someone say "don't sweat the small stuff"? It hit me on the head recently as I was cleaning some drawers out. (Yes, believe it or not, I OCCASIONALLY do "clean"). I stumbled upon something Drew had written about our family trip to Greece several years ago. It was a recounting of his very first cigar, which Lou shared with him, on a lovely summer evening by a pool in Santorini. Drew was probably 16 or 17. Lou used to enjoy a good cigar. Never at home, mind you, but at the office (this was before all these new rules we have now), on the golf course, or after a nice dinner out. I'm not terribly fond of cigars. Part of it is the memories I have of my grandpa who smoked ten cent white owl cigars constantly. Walking into their house immediately made me queasy. Lou's cigars never smelled like THAT, but I can't get that smell, or that queasy feeling out of my mind whenever I smell a cigar, no matter how good they may be. I never stopped Lou from smoking his cigars, or even complained of it, but I certainly did not encourage it either. The night Lou decided to teach Drew the finer points of cigar smoking in Greece was a perfect summer evening. We had had a nice dinner out, and we were all sitting by the pool. I was not at all expecting Lou to invite Drew to try one. I thought he must be joking. But he wasn't. He took great care in showing Drew how to cut the cigar, smell it, hold it, etc etc. I was not at ALL happy with this idea. I did NOT want Drew learning how to smoke a cigar at his tender age. I was convinced that this one cigar would lead to sex drugs and rock and roll, and that my son would never be the same. Not to mention, Damon was watching all this at HIS then tender age of probably 11. I steamed and fumed, I'm sure. I can be very good at that. I'm sure I ruined the moment. Drew's recounting of this event is wonderful. It does not say I ruined the moment, but it does mention it was "against his mother's wishes"....and there it was, staring me right in the face....after I read of Drew's delight in sharing this experience with his Dad, it hit me...it was NOTHING..one cigar in Greece between father and son...it was nothing, and everything. It was small stuff....and I sweated it. As I look back on that evening now, which surely was a special time for Lou and Drew, I wish I had not sweated it. I wish I knew then that it was small stuff. Small, but important stuff. I'm glad Lou shared this with Drew. And I bet Drew will share it with Damon at the appropriate time. I hope I won't sweat it when that time comes. And, I'd do anything to smell a cigar of Lou's now....lesson learned.

We "DO" for "LOU"

I had a different thought about all this today. Not sure I've had this thought before, and I THOUGHT that I've THOUGHT about every possible angle there is. Lou has spent pretty much his entire life doing for others. He worked incredibly hard for his family, incredibly. He took great care of his dear mom. He spoiled his nieces and nephews (let alone his own kids). He treats clients like family. He is so generous to his employees. He is so generous to his friends. When he sits on a board, he does NOT sit, he works and is involved. He plans meetings, trips, dinners, whatever in complete detail and makes sure it's done. He would give the shirt off his back to a street person. He donates time to organizations he believes in. He will fight to the end for what is right. He worked around the clock to get thru school. He goes nuts over Christmas. He remembers the "little people". I could go on. The point is, we could never really "DO" for Lou. For one thing, he is usually a step ahead of everyone and already has it done, whatever it is. And really, he wouldn't accept it much. Whenever he was sick with the flu, he would refuse to let me do anything for him. He wouldn't even let me do his LAUNDRY when we were first married for gosh sakes! So now I am thinking...we are finally getting our chance to 'DO" for Lou. ALLLLLL of us. He still doesn't like it. He does not like that he needs help with simple everyday things. But he cannot refuse it now. He HAS to accept it. So, I guess we are making up for 25 years of Lou doing for us, for me. I don't think I could ever make up for it. I could never do enough for him. Why does it take something this terrible to bring us to this point? Why can't we take care of each other all the time, not just when we need the care? Another unanswered question. Another lesson from Lou.

Dinner For Two

I knew it would be hard without Damon here...but I didn't know HOW hard. Damon left on Monday, he will be gone for the entire month of July, studying at University of Southern California. Lou and I are officially "empty nesters", for a month anyway. Tonight I thought it would be nice to have a decent dinner, at the table, vs. in the family room in front of the tv, which happens sometimes. I try to have us all have dinner together as often as possible. It's been a bit difficult lately because it's summer and Damon is often out and about, and, Lou's dining skills are a bit rocky now, so sometimes it is just easier to skip formality and eat in front of the tv , something I SWORE we would NEVER do in this household!!! So tonight, I decided to make a decent dinner (that's an oxymoron in this house you know) for Lou and I. I put some nice music on, set the table, etc. Lou seemed pleased with it all. But all too soon, the shroud of sadness came over him. It is impossible to just "chat" anymore it seems, particularly when it is just the two of us. Lou always goes for the tough ones around me, "why is this happening?", "it's getting worse, isn't it", "what do the doctors say?" (I really hate that one), "In the next eight weeks, what's the best thing that could happen to this family ?" (yes, he did ask this tonight), "have you talked to my mom lately ", "how is my mom", "how is your dad" (mind you, both are no longer with us...), etc. The light mood quickly dissipates and I'm left trying desperately to change subjects and/or end the dinner. In the "old days", such questions were somewhat routine. When I first met Lou he asked me "if you were in a crashing plane, what would be your last thoughts" (yes, I married him anyway)...so I'm used to it, but now, now the questions are so poignant, they literally take my breath away sometimes. And his eyes are so very sad when he asks them. I guess we can't really talk about everyday happenings since he is not aware of them, so this line of discussion must work for him, on some level. But it sure makes for heavy dinner conversation. By the time it is over, I'm worn out and so very sad. So much for a nice dinner for two. We are both in tears. We go back to the tv. It stops the questions...for awhile. It's going to be a long month. Dinner, anyone?

Wake Up

Earlier in this journey, I would say things like, "well, if people can wake up from comas after 20 years, maybe Lou can return to us". I had this idealistic vision of miraculously killing off the tumor, and replacing all the dead stuff with stem cells that formed new transmitters or whatever it is that's now gone. And Lou would then just one day wake up and say something like "wow, did I have a strange dream!", and all would be back to normal. Simple, huh? But then, how DO people wake up from comas after so long, and if they can do that, why can't Lou one day "wake up", assuming, of course, that somehow the tumor disappears. Totally different, I know. The news just reported another person waking up from a coma after 19 years or some such. Can you imagine how strange that would be?? Sometimes I think that is what it is like for Lou, each and every morning, like waking up from a coma. He doesn't know where he is, what day it is, what month it is, etc. Today he was very anxious in the morning, talking in his sleep, tossing, turning, he could not calm down. I think a feeling of panic comes over him when he realizes that something is wrong...and he DOES realize something is wrong. The other day he said to me that he felt something is "missing"...that he has missed large chunks of time. When he says things like that, I think maybe he is getting better...that's a pretty astute thing to say, right? Oh Cathy, you are the one who is dreaming...wake up, silly girl, wake up.

A Wink and a Smile

Funny, I had just written that I never get a wink anymore....and what does Lou do..he winks at me! First time in awhile. Last night, as he went to bed, head on the pillow, all tucked in...he winks...and then smiles...and I thank him. He seems surprised that I thanked him. I explain I have not seen a wink in quite some time. I cherish it, that wink. It made me feel good all night. That's all it takes now, something that simple...a wink, and a smile. Thank you, Lou. Maybe it is a life afterall?